Wednesday, November 09, 2011

My CFSAC Testimony: Educational Support

It's been a very busy week here, with Jamie back on the couch and my husband out of town, but I thought I'd just take a moment to share my CFSAC testimony with you.

The CFS Advisory Committee to the Department of Health and Human Services (U.S.) met yesterday and today. I had requested a speaking slot, after speaking for the first time at the May meeting about the plight of kids and teens with ME/CFS. I was hoping to go in person but figured I could call in my testimony if I wasn't able to travel to DC. Unfortunately, I didn't get a speaking slot this time - they had too many people requesting time (which is a good problem to have - our invisible community is becoming more visible!). Then, we found out last week that my husband had to go out of town, so my going to DC became impossible anyway.

But I did turn in my testimony, and I think it will be included in the written copies handed out to CFSAC members. Our local parent group had agreed to focus our testimonies this time on the difficulty of getting appropriate educational support for kids and teens with ME/CFS. I have been working on a more detailed post about 504 plans and IEPs and hope to post that later this week. In the meantime, here is my (unheard) testimony:

My name is Sue Jackson, and I have had ME/CFS since March
2002.Both of my sons, ages 13 and
17 have it also – they’ve both been sick for seven years.I spoke at the May CFSAC meeting with
my family about the need for attention and research on pediatric ME/CFS.Today I would like to focus on the
educational challenges for children and teens struggling with this illness.

Both of our sons have managed to keep up with their
classmates in school throughout their illnesses, but my husband and I fought
many battles with school administrators and teachers to afford them this
right.Our sons are both very
bright and are good students, and that has helped as well.We have often asked ourselves, “What
happens to kids that struggled with school before they got sick?Or kids whose parents aren’t as able to
fight for them or who aren’t as well-informed?”The answer is that those kids, as well as kids who are too
severely ill to go to school, are getting left behind.

Through much of the past 7 years, our sons have been able to
attend school at least part-time, thanks to treatment for Orthostatic
Intolerance.In working to get
them the accommodations they needed at school, we encountered many barriers
along the way, most of them due to a lack of knowledge about ME/CFS.One school nurse actually called our
pediatrician and yelled at her for 45 minutes, saying she didn’t believe the
doctor’s diagnosis of CFS because “he seems fine when he’s in school,”
obviously unaware thatmany kids
(and adults) experience good days and bad days with ME/CFS.

We have run into teachers that simply refused to work with
our son, saying that if he was sick, he needed to be on 100% homebound
instruction, despite the fact that he was sometimes well enough to attend
school.When we had the backing of
a supportive principal, those teachers were forced to comply with his
accommodations, but in some cases, we just had to work around those teachers.

Our son’s 5th grade teacher interpreted his newly
severe cognitive dysfunction as behavioral problems, telling us that our
normally obedient, straight-A student was “a defiant, cheating, disobedient
child.”In all cases, we
persevered, gaining support wherever we could, from principals and guidance counselors
and in some cases, calling district-level or state-level administrators.We educated ourselves on the law and
what our sons’ rights were.All of
this, and especially the hours-long, often combative meetings, frequently
resulted in a relapse of my own symptoms.

We’ve actually been lucky.Our stories are nothing compared to what we’ve heard from
other parents.Some kids with
ME/CFS have outright been denied an education, even by district and state
levels.We know of many cases
where parents have had to hire their own tutors and/or lawyers.In the worst cases, parents trying to
ensure an education for their very ill children have themselves been vilified,
with school administrators calling Social Services with threats of removing the
children from their homes.

With all of the challenges that these poor kids face in just
getting through each day with the disabling symptoms of ME/CFS, it is appalling
that they also have to fight for their right to an education.Many of these battles could be prevented
if school nurses, teachers, and administrators were properly educated about
ME/CFS.

In March 2001, Dr. David Bell wrote an excellent article on
CFS for a publication called School Nurse News that was then sent out to school nurses around the country by the
CFIDS Association, sometimes accompanied by Dr. Bell’s appearance at regional
meetings for school nurses.That
was 10 years ago and very little has occurred since then to inform educators
and support personnel about the challenges of pediatric ME/CFS.

As I mentioned in my May testimony, we desperately need
research into pediatric ME/CFS, including a full-blown population study to
estimate the number of kids and teens suffering with this illness.In addition, we need strong efforts to
educate school personnel and the public about the severity of ME/CFS, its
incidence in children and teens, and what kinds of support are needed to get
these kids the education they each deserve.

Yeah, Annie, that was horrible - we were so shocked. At first, we were sure, she had us mixed up with some other kids' parents. If you knew Jamie, you would know that all of those accusations were way, way off-base, just ludicrous, the complete opposite of the way he is. As it turned out, we figured out his cognitive dysfunction had suddenly become so severe that he couldn't remember what the teacher said a few minutes later, so he would ask a classmate or look at someone else's paper or simply not be able to do what she'd asked. She was awful!! Fortunately, he had a fabulous principal who'd known Jamie since kindergarten and was behind him 100%. She said, "I know nothing about this illness or 504 plans, but we will figure this out together." And when the teacher dragged her feet on the accommodations, the principal stood firm and said, "You WILL do this."

There are good ones and bad ones out there!! Unfortunately, it's all about lining up the right people to support you.

The question I ask is how do these people end up in teaching (where there are so many great people too thankfully) when they are so clearly not in tune with children? It just breaks my heart. Anyhow, sooo glad you had a decent principal and, of course, he had parents who were going to puzzle it all out. Bravo.

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.